OK, so things we 'learned' from my wife's procedure:
May-Thurner isn't necessarily related to CCSVI, but can contribute to issues.
- After reading Dr. Sclafani's learnings from his visit to Dr. Zamboni, we thought it made complete sense in the case of my wife. Her left leg, while not necessarily swollen, was often 'red'. So we asked our doctor to enter through the left (he hadn't been prior to her). Lo and behold, May-Thurner. When coupled with a blocked azygous due to a "web" he said he's glad this was caught early because it could have been bad.
The doctor believes that as symptoms disappear, they will do so as the issues are resolved in those veins. So if you're left with major symptoms after CCSVI, you've either had permanent damage, or they didn't get the right veins. He said, if you have MS, you're going to have CCSVI - no doubt about it. No matter how newly diagnosed to MS you are, you're going to have it. So why not treat it right away when the damage of MS isn't permanent?
He said he doesn't understand the resistance to the CCSVI theory, as he's seen some really amazing things in his procedures both on the table and for days/weeks/months after.
He openly talks about CCSVI being the major contributor to developing MS. Maybe not in all cases, but keep in mind he found 100% of his patients to have CCSVI.
He said, if your symptoms go away (especially physical ones) and stay away for a while, and then come back ... you've likely re-stenosed (or re-developed whatever issue you had with your vein) and should go be treated again.
He's said stents in his opinion aren't his first option, but he has no fear of using them. He did use them in a first time visit last week, but in my wife's case did angio as it held during the procedure, however, during follow-up that is an option.
He thinks there are more issues involved in CCSVI than just the jugulars and azygous (think hemi-azygous, accessory hemi-azygous, lumbars, vertebrals, iliac, renal) ... he said not all of those are going to be treatable, but opening paths to the heart at the main junctions is the way to go as it will put more flow pressure back through those other areas and likely resolve overall flow issues.
He seemed to imply neurologists aren't ever going to be on-board with this, until CCSVI is separated from MS. And then it's going to be 'taken' from them. He said, this makes more sense than any "the body turns on itself for no particular reason 20-some years into your life theory".
I forget a lot already I wanted to report, but like I said, the doctor wasn't shy about talking about CCSVI to us, his nurses, other doctors.
I have had a lot of people write me and ask if I'd let them know which doctor we used. I'm sorry, I'm not going to do that, and I'm sorry I'm not responding. I said before, it is being paid forward through proper channels ... just as it was to us. But for some reasons, I can't give his name to everyone ... also to those from Canada, I'm sorry ... that's another issue altogether. I am going to continue getting doctors involved, and as I do, I will be happy to pass those names on as well ... in fact I have a few I already have to some people ... but again, I have to do so discretely because of things like happened to Dr. Sclafani.
There are things starting up in a lot of places though, already recently and in the near future. ALL over, not just interventional radiologists either ... vascular surgeons, cardiovascular surgeons, neurovascular doctors, and the like. My best advice is to write all of them, get them involved. It's not as hard as it sounds.
My wife had a 10 inch balloon in her azygous too ... can you believe that? 10 inches? CRAZY.
He also said follow-up regularly is going to be critical. He said to think this is going to be resolved after one visit is crazy. He thinks you need to give it time and see what changes/develops, and then go back and see how a second round of in the veins compares to the first ... but if you're going to Poland/Bulgaria/India how are you going to do that? He said people need to go to a doctor they can get back to easily if they need and that knowing your doctor is as important as how aggressive they treat something right away and then never see you again because it's 1/2 way around the world.